End-of-Life Decisions in the Case of Charlie Gard: A Multi-Religious Panel

Panelists -John D. Lantos, MD, Director, Children's Mercy Hospital Bioethics Center, Professor of Pediatrics, University of Missouri-Kansas City School of MedicineAsma Mobin-Uddin, MD, FAAP, Clinical Bioethicist, The Ohio State University Center for Bioethics, The Ohio State University College of Medicine Columbus, Ohio, Staff Pediatrician,Nationwide Children’s Hospital, Columbus, Ohio Michael Redinger, MD, Co-Chief, Program in Medical Ethics, Humanities, and Law, Western Michigan University Homer Stryker MD School of MedicineCharlie Gard, a British child with a rare mitochondrial disorder, was 11-months old in the summer of 2017. He generated international media interest when his doctors’ attempt to withdraw medical treatment over his parents’ wishes was supported by the British courts, and he is likely to be long remembered in the annals of seminal cases in bioethics. In brief, Charlie’s rare genetic mitochondrial disorder disrupted his cells’ ability to generate energy and led to progressive muscular and neurological dysfunction. His medical situation reached a point where he required permanent mechanical ventilation. With no known cure or experimental treatment likely to be effective, his physicians requested a change in goal of treatment to palliation and counselled the family to withdraw what the physicians considered to be non-beneficial aggressive treatments. When Charlie’s parents refused, the hospital sought recourse with the courts arguing that the parents were insisting upon continuing medical treatments that were excessively burdensome and no longer in Charlie’s best interest. After progressing through several layers of the British legal system, the courts found in favor of the hospital and ordered the termination of ongoing life support. Ultimately, after a US doctor who initially proposed that an experimental treatment may be beneficial withdrew his claim, Charlie’s parents agreed to withdraw life support.

This case opened a myriad of questions about the balance of authority in determining end-of-life decisions for a terminally ill infant whose parents insisted on continuing life support over the objections of the child’s physicians. While his life initially drew interest and commentary from Catholic bioethicists and prompted statements from the Catholic bishops of England and Wales and the Vatican Pontifical Academy for Life, it eventually involved Pope Francis, President Donald Trump and a number of secular bioethicists. Questions asked included: Were the doctors in Britain overstepping their authority? In seeking to withdraw aggressive treatment, were they avoiding the evil of Charlie’s suffering? Is there medical and moral legitimacy to the concept of non-beneficial treatment? Were the doctors discriminating against disabled children? Was the family being unrealistic; were they being vitalistic? Who has a right to make decisions about children: the parents, the doctors, or the state?

This panel will attempt to both summarize the debate by Catholic ethicists and to bring into interreligious dialogue the perspectives of Jewish and Muslim bioethicists. The panel moderator will summarize the clinical facts of the case and frame the ensuing conversation. The panelists will then present short papers meant to facilitate conversation around these questions. The first speaker will summarize the different arguments put forth by Catholic bioethicists while the case was ongoing and argue that proper application of Catholic teaching does not preclude the concept of non-beneficial treatment which requires physicians to withhold treatments when the expected harms far exceed the expected goods, if any, and that this construct is applicable to the Gard case. The second and third speakers will explore how their faith traditions, Jewish and Muslim respectively, would inform their analyses of the case, addressing the above questions and other aspects of the case which may have been neglected.